Another bad day in paradise. Is it time?

I just want to say thank you to you and everyone who replied on this forum. I am going through the same thing with my wife and was at my wits end. I read your situation and all the comments and felt hope. I began my search for AL/MC facilities yesterday and will continue the search next week. You all are a blessing to me for sharing your stories and situations. No one outside of the caregiver group mows the pain we feel. God Bless you all.

Hello:
I apologize if this reply repeats other responses. From what I read, it seems like now is the time for your unfortunate husband to be placed in a facility. It is not an easy decision to make but his and your personal safety need to be considered.
This is my suggestion: The next time he falls, dial 911 and have him brought to the ER. You may have to insist he go. Once he is in the ER, tell everyone you encounter that you are no longer able to keep him safe at home. Tell the person who checks you in, the triage nurse, the nurse who cares for him in the ER, and the provider (either the physician or nurse practitioner, whichever one sees him) you are unable to keep him safe at home. Let them know all of his unsafe behaviors. Ask if there is a social worker to whom you can speak and get advice. Hopefully, he will be admitted for geriatric psych evaluation and following that, placed in a facility close enough for you to visit.
This sounds simple but it can be incredibly anxiety and guilt-provoking. There is no reason to feel guilty and yet that is what happens when we decide to take this step. Just keep reminding yourself about his unsafe behaviors and keep in mind how much worse you feel if something drastic were to happen at home.
We tried to keep our Mom at home but because of her dementia, she just could not be reasoned with. She wanted to continue to drive and live on her own but her unsafe behaviors would just not allow it. She has extreme memory loss and sundowning, which made her impossible to deal with every afternoon into the evening.
She is now in a very good facility and we go to visit frequently. Sadly, she still asks about when she will be going back home but we are afraid if we try it, we will be back to square one or worse.
I wish you all the best, I hope there is someone in the family or a friend or priest or pastor you can speak with for emotional support.
Thanks for reaching out!

It's not time. It's past the time. You will never be able to get someone with Dementia to agree with certain things regarding their care. You have to be their PARENT.

How soon will the spinal surgery be; and will it be inpatient or outpatient? If you could get it to be inpatient and d/w doctor in advance to see whether he can ensure your husband could stay in for a few days, and then speak with the social services team to strongly advise that they will need to find placement for him, that he canNOT come home, then I would go that route. And if you need to be less "there" for him in the hospital and allow "the professionals" to get him situated and be away for him to settle into his new surroundings, I would try that route. And if you can go a further step perhaps and be away, perhaps out of town to relax and recuperate, it may be the best way for him to readjust. I wish you the best!

We sometimes focus on the illness and not the person we shared our lives with, your husband sounds like he likes to be doing things that are constructive. He feels the same way that you, your just lucky it didn't happen to you first, if it happens to you. My mother was a physical therapist, she was amazing with what she was able to do with people that doctors gave up on. So when her body started to fail her, and she could no longer manage doing the simple things like walk, get out of chairs, groom herself, and at 80 depended on me for all physical needs. I remember her looking at me, she was frustrated and had been sitting in the bathroom as I stood there, She said, "What a revolting development!" She had a good head on her shoulders, but her own body, after helping so many other gain back their range of motion, walk, moving from a locked position, her own body was beyond her repair. Her god-daughter came over and brought her coloring books, and colored pencils, as well as drawing pads. My mother used to paint pictures, of ships, lighthouses, the beach, the ocean, shore things. These pictures she colored became very important to her and she was so proud of them.
Your husband may need an channel his attention, you said he was trying to do things that fix or repair areas in and around your home. He may like to tinker with broken things and try to fix them, or some hobbies where you can buy a kit and construct a bird house, if there are things around the house that he can repair, alarm clocks, furniture that is made of wood and needs to be sanded and repainted. hinges on cabinets, door knobs, any type of fix it or build it type of things, this could be a solution to your feelings of being his only outlet, besides food and television. Remember that there are so many aspects to each of us, and because we lose the ability to think the way we used to and move the way we used to we still need to feel a sense of accomplishment. This is just my opinion, and advice, I hope it helps. Have a good night.

Earthgrammy: In answer to your question as to whether it's time, it's well PAST time. Heaven forbid - your husband climbed a tall ladder and armed himself with a machete. Good grief - he could have been SERIOUSLY injured. Do not wait until he pulls a more serious stunt because his brain is broken. In fact, lock up tools and what could be considered a weapon, e.g. do not let him have access to these items!

If I could go back in time, I would just get the respite caregiver over my mom's loud objections and insistence that she didn't need anyone. Mom was mad at me anyway, almost all the time for crazy stuff that she made up inside her head. At least by bringing in the caregiver, she would have had a legitimate reason to be mad at me. We become crazy when we try to play by the old rules of letting the person who use to call the shots, still call the shots. They can't!

And, yes, it's time.

Remember these two things.....their brains are broken and they will get worse and will never cooperate. And they made their bed, even if it is not their fault, and now they have to lie in it - you know what to do - so do it.

I am so sorry so many people put up with so much and it should not be like that. When people's behaviors and needs start to overwhelm their caretakers and start destroying the lives of others around them, who would not be furious and lose it - very few would be able to tolerate this. You cannot repair or fix these people - they are damaged for whatever reasons. You cannot keep them - they lived their lives and you must take care of yourself. If they don't go to a facility voluntarily, then take appropriate action but get them placed. Don't wait. Do it now.

It is time. If you burn out and give up then there are two losses, you and him.
When there is care available use it.
When he is in a safe place, then your visits are in your control, if it is a good day and connection is there, great. If he is obstinate, tell him you have an appt and go.
You can't live with someone who is illogical and keep your sanity.

Earthgrammie,
I can soooo relate. I don't think there is a hard and fast rule but when he is not able to be safe and you are not safe caring for him. It's time. My husband is not quite as far as yours sounds. But I fear it's coming....
I am seeing some of the same types of behaviors with my 61 yo husband. It's as if he were still 25 and strong like bull... even with HX of two strokes,...He will drive up north and work himself almost to death at our cabin, or he will walk on the roof like it's sticky, or he'll climb ladders, use chainsaws and try to fix up 25 year old cars, bring greasy dirty tools inside our clean home... All the norms of our 40 years have gone out the window, logic and rational thinking is impaired.. but he can behave completely normally at times. Receptive communication is impaired and impulsiveness and strange things continue..... off and on gaah. Blessings.. this is a rough season. We are all with you. It really does help to vent.. sometimes I just pray pray for God's wisdom to be given to me...

It is time. If a person needs 24 hour care, one person cannot really do it--you must sleep, shower, etc. My SIL's FIL (no relation) was being "cared for" by his son 24/7. The son did as well as he could and thought things were OK. Then he got a call from the police. The father had awakened early, dressed and went to the 7-11. Unfortunately, he had put on 2 shirts and no pants! It could have been much worse. After that they placed him in memory care, even though they had really wanted to care for him themselves. There comes a point when 24 hour active supervision is necessary. You simply cannot do that yourself. Nobody can.

It's not your fault, but it is your responsibility to your husband to keep him and others safe from his failing mind. Try to comfort yourself that you have already done all that you possibly can do.

No one has addressed this so far. Be sure you have all the papers required to manage his affairs, POA, medical and financial, end of life wishes, there are many checklists, get everything signed, notarized now. Call Social Security and Medicare with him on the phone to allow you to access his account. Then as others have suggested, following surgery, sent to rehab or if they try to send him home, say you can not care for him at home and go straight to assisted or more likely memory care. Good luck, my 96 yr old Mom in memory care 4 years is my 5th experience caring for LO with dementia, it does not get better, they can't understand, their brains are broken.

It's definitely time. I also reached the "no patience/cares left to give" point.
Get him placed where he'll be safe and reclaim your sanity. You don't need to get bogged down with guilt or obligation because it's a necessary and right thing to do.

I told myself that I would keep my Husband home as long as it was
SAFE for me to care for him and SAFE for him.
I think you have reached a point where it is no longer SAFE for him to remain at home.
I am sure he fully intended to stay in and watch re-runs but with dementia you never know what is going to pop into that brain.

You do not need him to agree to placement.
Yes he will be royally pissed at you.
He will be angry.
he may even say he hates you for doing that to him.
BUT
You are doing this because you want to keep him safe.

In the early process of my Husbands dementia I often said that a "bad day" this month is going to be a "good day" in 2 months. It is like trying to walk up a sand dune, you get so far and you slide back a bit and then you start again.
You have to rejoice when you get a little further but be prepared to back slide.
(The Serenity Prayer became pretty common for me)

Placing someone is a tough decision. Only YOU can tell if it is right for you and your husband. Do not let anyone "guilt" you into doing something you can not do. Placing him in Memory Care is not a "failure" it is admitting that he needs more care than you can safely give him at home.

You need to tell him tough titties and get respite care. Believe me it’s a lifesaver. You must recharge your batteries. When I took care of my dad I loved the time to go out for shopping or get a meal out with a friend. It’s time for some tough love if you want to be in it for the long haul. You might want to tell him if he wants to stay home and not go to a nursing home them that’s how it’s going to be.

Yes, it's time. Feeling "cold and hard inside" isn't going to get better. If you need permission to place him in memory care, then by all means go ahead.

I have one CNA That comes in 2 times a week and she cleans and Bathes him , does Laundry . It Makes a Big difference . he doesn't Have a choice your Burnt out . I would Look Into some help it makes all the difference in the world .

It's not up to the patient to decide when additional help is needed, it is up to the caregiver.

A good friend asked me after my nine years plus of caregiving, 'why do you think ____ (loved one's name) life is more important than yours?"

I’m so sorry. I am not yet at your position, but I will be. We also have no friends or family to help. Just me and my husband. He is in early stages.

I hate to say it, but from what I’m reading, it is time. You have given all you can. You need to get a break. It will be probably the toughest thing you ever do. But for your own health, you need to get your husband into a facility. Neither of you will like it at first. But you don’t like it now. You are wearing yourself down. You know it’s inevitable. You will visit as much as you can…you are still each other’s lives. That won’t stop. However your husband needs care, you need a rest. If your husband were able to think clearly, he’d probably tell you to let someone else do the “heavy lifting”.

It’ll be a battle, but your husband may get seriously hurt. You don’t want that. He isn’t thinking straight and he doesn’t realize the danger he puts himself in.

It is time. The thoughts and prayers of mine and probably everyone on here are with you.

It is time for a respite caregiver or residential care. The him you need the caregiver for your peace of mind.

You are allowing someone without full mental capacity control you.

Figure out what’s best for him and do it. Don’t doubt your decision.

Nothing will get better. You will continue to stress. He will continue on his path of decline.

I hope I have provided you with the kick in the butt you need.

Take care,

Ex-caregiver providing info from hindsight

Oh, my. We are living the same lives. I came home one day to find my husband on a ladder with a chain saw! And I am also not a very patient caregiver. This journey is truly, truly hard. The hardest part at this mid-point in dementia is that he is still capable of doing many things for himself. He can fix himself breakfast, watch the news and understand (though not remember a few minutes later), or even use the leaf blower to clean the lawn. However; judgement, logic, balance and memory are declining every day. I, too, am wondering how to make the next step into seeking help a non-combative issue. He thinks he's fine! I've been following this forum now for several months and I do find a kind of kinship here. This is my first post/answer and I am so grateful that I read your question. It makes me feel less alone and that in itself is a help. One thing that I have been working on is doing research into what help will be available when the time is right to engage it. Having some kind of plan in place is also comforting ~ even though I already know nothing will actually go as 'planned'. Stay strong, don't beat yourself up for not living up to some vague definition of standards and know you are not alone. Peace.

Please try to get aides to come in to watch over your husband when you have to go out. He sounds like he needs someone 24/7 watching over him, and this is too much for you to do on your own. You also need to take care of yourself and find ways to give yourself some breaks from caregiving. Get connected with a local social worker who can help advise on your and your husband's options. Medicare may pay for aides. Have a Plan B, for when it is too much for you to care for your husband at home. My mother began falling alot as her dementia progressed, and eventually she 'forgot' how to walk. She must be transferred from her bed to a wheel chair (or geri chair, which is a medical version of a lounge chair) and it takes 2 people to do this, even though she weighs about 90 lbs. She's a dead weight. If your husband has dementia, he may not be able to make good judgements about himself at this point. His basic options, when you no longer can do it yourself, are in-home aides, or assisted living/memory care facilities. All the best to both of you!

I've read that when someone with dementia is sedated, they may not return to the same level of cognizance that they had before sedation. If your husband has spinal surgery, I am sure that he will be anesthetized, and that there is a pretty strong likelihood of him not being where he was before the surgery. The choice may already be made for you. After surgery, he'll go to rehab. After rehab, you might not be able to care for him at home.

My husband has CHF and other heart issues. Surgery was recommended. After discussing the ramifications of being put under twice (once for the testing, once for the surgery) he decided that he'd rather die from the natural progression of CHF than be the guy in MC for years with a good strong heart.

My Dad didn't think he needed help either. I hired someone to come in to keep eyes on him for my sake. I introduced her as "my friend". Then, she would occasionally "drop in" and wait for me. At that point, I was working and coming up after work. I don't know if that would work for you, but there was the day that I got a phone call at work that he was on the roof, sweeping leaves and wouldn't come down. *sigh*.

Bless their hearts, they are losing independence and they know it. Find some outdoor "jobs" you can do together. It's hard. I wish I could help more, but this dvice is something you can do until you reach a decision.
Another thought...if he's a veteran, check with your local VFW to see if they might have anything in place for someone to come and visit, and maybe invite him to a meeting or activity.
Bless your heart too. It's hard. Really hard. You need someone to vent with, and some time away. Try as much advice as you can get on here, and when you're comfortable that he's ok, go for it and get out of the house!
He's only going to get worse, and it's better to get him used to relying on someone now than later. Just a thought from an experienced caregiver.

INatalie Cameras so when you're gone you can check in 24 7.

Hire someone anyway to keep him company while you're gone.

After dad’s stroke, a CNA came in to serve as a companion at times. Although Dad may have felt he didn’t need this initially, their personalities really “clicked” and they became very good friends.

He helped dad in the shower (something that was uncomfortable for me). He helped dad by taking him to the gym and spotting him for workouts and they liked playing games and working puzzles, which was therapeutic for dad.

if you find the right person, your husband will even look forward to these visits. Look for someone that shares common interests and hobbies. That way they can watch “the game” together and/or enjoy outings more.

Don’t feel badly for needing alone time (everyone does). He will need to accept the company one way or another, because it sounds simply unsafe for him to be unsupervised. If he insists on staying alone, any outing could become catastrophic.

My Dad also did not want respite care but we got ii anyway and he ended up really enjoying the visit from the home care aid who gave him a shower and shaved him. They became friends. I would consider just getting the help. You need to take care of yourself too and this will help you.

I could have written this. Hugs.